Living With Conditions

Looking to the Future

Print

Medical Home

A medical home is not a physical home, hospital, or treatment center.  It is an approach to healthcare for children and youth that have chronic medical conditions.  A medical home brings the doctor, patient, and the patients family together on one team.  They work together to make sure all the needs of the patient are met, medical and otherwise.  The doctor and family each play an important role in supporting and helping fulfill the needs of the patient.  The American Academy of Pediatrics said medical homes should be “accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective”. 

The goal of medical homes is to make sure help and treatment is available to all children and youth; it is to keep the children healthy and away from the hospital.  The American Academy of Pediatrics, the Health Resources and Service Administration (HRSA), and other organizations hope that having this support system can make the transition from childhood to adolescence and then to adulthood easier for the patient to handle with better outcomes for everyone.   

To learn more about medical homes and find out how you can get started on your own, visit the National Center for Medical Home Implementation.

Transition

One of the major milestones for all families is when a child begins to transition into adulthood. While this transition period requires planning for every family, it is especially important for families of children with health conditions. There are many resources available to help assist in this transition process. It may also be helpful to reach out to an advocacy or support group, as families who have already experienced these transitions are often good sources of information.

For more information on transition go to our Transitions page.

There are also videos and resources that discuss the transition process put together by the Region 4 Genetics Collaborative that help you think about key transition points and to provide resources that may help you plan for them. Check them out here!

The New England Genetics Collaborative created a website called "GEMSS: Genetics Education Materials for School Success." When your child reaches school age, you can provide teachers and school administration with this resource to inform them about your child's condition and any special needs they may have.

Preparing for an Emergency

While no one likes to think about the possibility of an emergency situation, it is important to be prepared. Often emergency situations occur so quickly that it is difficult to think through the scenario and clearly communicate the information that medical providers need to know about your child’s condition. One helpful tool is to create a wallet-size card with disease-specific information and guidelines that family members or the child can carry around and hand to medical professionals during a time of crisis. Some advocacy organizations may have already created something similar that can be used, so make sure to check with them about their specific emergency preparedness recommendations.

If you’re looking for emergency cards or other resources to be prepared, try: